1. < Blood Cancers & Disorders

Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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susanh824 | @susanh824 | May 17 6:28am

I’ve had it for somewhere between 10-15 years. I see a hematologist and oncologist once a year while the numbers have increased steadily, I am not at the smoldering level yet, and my oncologist says I have only a 10% chance each year of developing multiple myeloma. I’m 64.

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1 reply
sissypuss | @sissypuss | May 16 4:07pm
In reply to @gingerw "@mjlandin Welcome to Mayo Clinic Connect. There are several discussions here in the Blood Cancer &..." + (show)
@gingerw

@mjlandin Welcome to Mayo Clinic Connect.

There are several discussions here in the Blood Cancer & Disorder group that speak about MGUS:
https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/
https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/
From the Mayo Clinic website is this information: https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

From the International Myeloma Foundation is this very informative article: https://www.myeloma.org/what-are-mgus-smm-mm

For my case, I was diagnosed with MGUS thanks to an observant nephrologist [kidney disease unrelated to MGUS]. It then advanced to smoldering multiple myeloma, in a short time, which is very unusual, and in a year advanced to multiple myeloma, again unusual. I will say my health journey has never been normal, so why should I stop now? The vast majority of people live for years with MGUS and no further complications, going through quarterly or semi-annual bloodwork for monitoring values.

Feel free to ask away!
Ginger

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I have it. I just found it on my chart and don’t know what to do next.

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2 replies
cherylmcg | @cherylmcg | May 14 4:28pm

Thanks for the hugs and empathy. I do the best I can but now also find RA May be causing lung disease-I guess we all have to face our decline…..

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Clifford Gerwig | @cgerwig66 | May 14 7:34am
In reply to @cherylmcg "I have had MGUS for about 5 years which is low but slowly increasing. I have..." + (show)
@cherylmcg

I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

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I hear your pain the neuropathy and fatigue are horrible it changes your life !!!

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melij | @melij | May 14 7:31am
In reply to @cherylmcg "I have had MGUS for about 5 years which is low but slowly increasing. I have..." + (show)
@cherylmcg

I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

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cherylmcg such a valid feeling – losing out in so many activities has been an issue for me as well. My friend said it was like grieving a loss and to acknowledge those feelings. I have learned to adjust how I do sports to my changing level of ability and not worry about those super healthy women …..xo 💓

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cherylmcg | @cherylmcg | May 13 10:22pm
In reply to @cgerwig66 "I was diagnosed with mgus over a year ago. Since then I have been really sick..." + (show)
@cgerwig66

I was diagnosed with mgus over a year ago. Since then I have been really sick I have severe neuropathy shortness of breath.
I get no answers for the doctors. I have had bone biopsy fatpad biopsy and kidney biopsy. No answers. I hope you the best with your mgus. And I hope doctors get a handle on it I believe. It needs a lot more attention that it gets.

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I have had MGUS for about 5 years which is low but slowly increasing. I have neuropathy and fatigue. I recently saw a number of super healthy women playing pickleball in the evening and was overcome with sadness at my disability.

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2 replies
pmm | @pmm | May 12 11:49am
In reply to @cgerwig66 "I'm starting to have spells my blood sugar gets really low and I'm not diabetic." + (show)
@cgerwig66

I'm starting to have spells my blood sugar gets really low and I'm not diabetic.

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My blood sugar levels are overachievers.

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Clifford Gerwig | @cgerwig66 | May 12 10:57am
In reply to @pmm "Clifford do you have any other health issues? I’m so sorry you aren’t getting the answers..." + (show)
@pmm

Clifford do you have any other health issues? I’m so sorry you aren’t getting the answers about your symptoms. It’s frustrating.
Have you a good hematologist/oncologist? Maybe a second opinion?
Do they do routine blood analysis to check to see if your MGUS is progressing?
I’m so sorry. Nothing worse than feeling sick unless it is feeling sick and having no answers as to why.
My MGUS was diagnosed for the first time in August 2021. If I felt bad… Which I don’t… I would consider going to the Mayo Clinic. I’m in Arkansas and not close to Phoenix or Rochester, but it would be worth it to get a second opinion. I like my hematologist/oncologist very much and we are watching my numbers. We do bloodwork every 3 to 4 months. I do have this pesky neuropathy in my feet, which somewhat limits my level of activity. I try to just carry on, ignoring my poor feet. They complain a lot but 🤷🏼‍♀️
Check back in and let us know how you are doing.
Patty

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I'm starting to have spells my blood sugar gets really low and I'm not diabetic.

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1 reply
Clifford Gerwig | @cgerwig66 | May 12 10:55am

Dose any one with MGUS have a problem with low blood sugar.

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pmm | @pmm | May 11 2:25pm

Is he or she a multiple myeloma specialist? I really think that’s key. The information keeps changing all the time. Fortunately… There is much more efficient treatment now than there used to be and they really have to stay on top of that.
And I’m sorry about your shortness of breath and neuropathy.
Patty

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